Thursday, December 22, 2011

Carlos started taking Coumadin at Dr Steidley's recommendation a couple weeks ago. They have really changed how they manage coumadin. No more lab draws....just a finger stick to check his INR levels. They are working on getting him into a therapeutic level, which is 2-3. When Carlos was on coumadin the first couple years after he was diagnosed, he took large amounts of the medicine to get therapeutic. I can remember them asking him at every visit if he was taking his medicine every day. I think he ended up on a stable dosing of 7.5mg alternating with 10mg.

As of today he has an INR of 1.5 so they increased his dose to 5mg alternating with 7.5mg. He gets it rechecked on the 30th.

We met with the sleep doc to follow up on his sleep study on Tuesday. We found out he was having an average of 51 'events' per hour. Wow! No big surprise - Carlos has sleep apnea, but not the kind most people think of. He doesn't have the obstructive kind, where the airway is collapsing during sleep. This blocks airflow so one experiencing this would wear the CPAP mask, which would blow air into the airway to force the collapsing tissues open. So what does he have?

Carlos has Central Sleep Apnea. This apnea is related to the brain's signals to the muscles that stimulate breathing. Apparently this is pretty common in those with congestive heart failure. Up until 2-3 years ago there was no treatment! Now there is a machine (very expensive according to the doc) that can treat this type of apnea. It's called adaptive servo-ventilation (ASV). So he had to go do another sleep study so they could get settings configured. Carlos said he slept very well. He was quite surprised.

The doc is gonna get the study results signed off next week so we can get the machine before the end of the year. Our deductible starts over at that time :p

Thursday, December 15, 2011

We started the evaluation shortly before Thanksgiving (which was catered as Carlos' stamina doesn't allow for much cooking any more - we definitely missed his yummy holiday foods). Dr Steidley wanted to rule out other possible causes of chest pain, such as a PE. They would also be looking for other possible underlying causes that may be worsening his condition, that are perhaps treatable. No PE, no other conditions. Just that crummy, bad heart.

Go out to your garage and grab a basketball....I know, weird request but just do it.....got it? OK, that's about the size of Carlos' heart supposedly. I find it difficult to believe. I really want to see it once he gets his new heart (that's the medical curiosity in me).

Going back to the evaluation...Carlos did significantly worse on his stress test, the right-sided heart cath was also less awesome. In fact they gave him some IV medication to decrease his blood pressure during the procedure, which reduces the workload of the heart, in turn increasing ejection of blood from the heart. Afterwards, Dr Steidley talked to me briefly. There had been some discussion about whether to admit him for the eval versus doing this outpatient. We were happy that we had been able to stay out of the hospital. Dr Steidley told me that normally he would admit someone with a heart cath like this but because Carlos had been stable he would let us go home. I had mixed feelings about this. There's a lot of fear living with someone this sick. It's reassuring when he is in the hospital - I know someone is watching that telemetry monitor....and can do something very quickly if he goes into V-Tach or V-Fib, which are both dangerous rhythms. He has had short runs of V-Tach but never enough to set off his defibrillator. I wish I didn't know that. Sometimes ignorance is very blissful :p

We don't actually go for the follow-up on the sleep study until the 20th. Apparently it was not a restful night for him, although I slept quite well :p I even let the girls sleep with me :)

He said that they tried him on a couple different masks - didn't really like either of them....I'm like 'whatever, you'll do whatever you need to do'. So I will be very curious to see what the report has to say. Will keep you posted.

Tuesday, December 13, 2011

When Carlos gets overloaded (with fluid) he doesn't sleep well. Probably because he stops breathing for 10-20 seconds at a time. Doesn't make for sound sleep for me either. I end up waking a lot to check and make sure he is breathing. So probably sleep apnea...the Mayo clinic had also done some testing that indicated his oxygen saturation drops during the night. So when we tease Carlos that his brain isn't perfusing well, it's possible that that is really the case at night!

Today the doctor said that in Stage IV heart failure (or end-stage heart failure - which sounds incredibly scary), a certain breathing pattern may occur which doesn't respond to typical therapies for sleep apnea but he says he has other things that can be done.

The remainder of 2010 was ok - it took a bit longer to settle back into complacency but we did. We did make the switch to a cardiology practice that took the Mayo Clinic recommendations a bit more serious. They placed Carlos in a study for Bi-Ventricular Pacemakers. He had this fancy pacemaker put in around September of last year. We were told that he had a third of a chance at great improvement, a third of a chance for small improvement, and a third of a chance that he would see no improvement at all. So we went for it. We've been very happy with Tri-City Cardiology and Dr Marc Berkowitz.

This year, up until about the beginning of October, was uneventful. At that time, I noticed that Carlos appeared pretty lethargic. He would have good days and bad days prior to this, but it seemed to become a constant string of bad days. He began sleeping approximately 15-16 hours a day - not all at once, but lots of napping throughout the day.

On Halloween night - which figures, as it's my second favorite holiday and we had plans to watch scary movies all night and eat junk food :p, Carlos started to experience mild chest pain early in the evening. I had him lie down while I checked his blood pressure. After about ten minutes, when the pain wasn't going away, I told him I was taking him to the ER. He was admitted and the next morning they told us they thought he had a myocardial infarction (MI) or heart attack. We were very surprised - an MI hadn't really crossed my mind - even with the chest pain. Both his heart cath in 2002 and 2010 showed no coronary artery disease (CAD)!

He was transferred to another hospital so his cardiologist could provide care and do another heart cath. Again, no CAD. That was the good news. So no heart attack. But the bad news was that Carlos' heart function was worse and worse than it had been prior to the upgraded pacemaker :p It was a tough day that day. I'll never forget sitting in the waiting room during the heart cath (I get very nervous when he has these down so my mom and a friend, Heidi, were keeping me company) and Dr Berkowitz coming to tell me that it was bad and we needed to get the Mayo Clinic involved again. My heart dropped into my shoes :p

That afternoon I was on the phone with the Mayo clinic and they were able to get him in the following week for a consult with the same CHF specialist on the transplant team we had met the year before. After meeting with Dr Steidley the following week, it was decided to re-evaluate Carlos' condition and need for transplantation. Yea, more waiting rooms. Fun. More poking and prodding for him. Woo. Hoo. Carlos was rapidly developing a distaste for hospitals but I told him to suck it up and get over it. He would do whatever was necessary to stay with us.

Carlos left the hospital in 2010 weighing in at 216 pounds....he had dropped 30 pounds in 8 days.

We were initially referred to the transplant program in Tucson but due to an insurance change, ended up at the Mayo Clinic in July 2010. By this time, Carlos had rebounded a bit and was feeling better again. The transplant eval was long and tedious. It involved 5 days of testing, testing, and more testing. For me, it was a lot of time spent sitting in waiting rooms :p The transplant team decided that he was not sick enough to be placed on the waiting list. His ejection fraction had increased to 10-15% and he was again tolerating that. People were and continued to be amazed at how well compensated he is for how sick he is. The team did make some recommendations regarding medication changes. So we returned to the primary cardiologist with those recommendations....he did not inspire any more confidence in us - he couldn't remember Carlos' history. We ended up switching to a new practice, which is where we are currently.

Carlos did well for several years. He was gaining weight and despite my concern that he was developing ascites, seemed to be doing well. We moved to Arizona in 2006 and were thrilled that there were two transplant programs in Arizona - here in the Phoenix area and in Tucson.

The cardiologist put in an AICD in 2007, telling us that people with his heart function were at higher risk for sudden cardiac arrest and this would provide a safety net for him. Gee, very reassuring. :p

I harassed the docs about his continued weight gain, Carlos having gained about 30 pounds very gradually over the past 5 years. They reassured us that it wasn't fluid. They would look at his ankles and say he isn't swollen. I would always tell them, he accumulates fluid in his belly not in his legs. What we learned later was this is typical in young people with heart failure. They tend to present differently than older people and the traditional CHF signs and symptoms are not seen as often. Primary cardiologists are not used to seeing young people with heart failure and I guess aren't as aware of how it presents in them.

By 2010, he was weighing in at about 245 pounds. He left the hospital in 2002 about 200 pounds!

In February of 2010, Carlos picked up a cold. Then it progressed to bronchitis. He was treated with antibiotics, where he briefly got better. He then worsened and was diagnosed with pneumonia. He was treated outpatient for that. But we were concerned because he was so run down so by the beginning of April, he was told to come in through the ER and he would be admitted for a heart cath. He hadn't had one since 2002. Previous echos over the last few years had showed some slow decline in heart function. His ejection fraction was around 10-15% now. After the heart cath, they determined his ejection fraction was down to 5%! No one could believe he was still able to walk around. It was a very scary time. We thought he might die.

The hospital stay was a horrible experience. We had two cardiologists arguing (once in front of us) about the best course of action. One felt he should have a upgraded pacemaker called a Bi-Ventricular Pacemaker while the other thought he didn't meet the criteria for the research study on it and wanted him to have transplant evaluation. Here's a video that will give you an idea of what was going on...

In 2002, with only 2 1/2 weeks of nursing school left, my husband was admitted into the hospital and diagnosed with dilated cardiomyopathy (DCM). Our world, not a comfortable one to begin with, came crashing down. Who gets diagnosed with this and congestive heart failure (CHF) at the age of 33?

We were living paycheck to paycheck. Carlos, my husband, was working two jobs to support us while I finished nursing school. I was all set to graduate in May of 2002 and had a emergency room job lined up for after graduation. We had our son, Christian (then 7-years-old) and our older daughter, Daja (then 2-years-old).

Carlos had been complaining on and off of abdominal pain and was experiencing a night-time cough for a couple months. We finally went in to see a family doctor, which resulted in the admission for CHF. He had a blood clot in one of the chambers in his heart from the poor heart function as well. He spent 8 days in the hospital, having tests done, medications started, etc. He had a left-sided heart cath which showed an ejection fraction of 15-20%. He left the hospital after 8 days weighing about 35 pounds less than he did when he went in! Within a couple months he was able to go back to work but with lots of meds to take.

One year after the initial diagnosis, Carlos came in for another echocardiogram. Unfortunately the news was not good. The docs told us that there was no improvement in his heart function and likely wouldn't be at this point. I remember that office visit very clearly because it was the first time we were told he would eventually need a heart transplant. They couldn't tell us when - they said could be 6 months or it could be 6 years. They wanted us to go to Medical University of South Carolina (MUSC), where there was a transplant program. We lived in South Carolina at the time. I can remember Carlos telling the doctor he wanted to live long enough to see the kids (we had Libby by this time - she was just a couple months old) graduate. That brought tears to my eyes....I wanted him to live long enough to see them get married, see grandbabies, etc.

We saw the people at MUSC periodically and followed up locally with the cardiologist. And time went by. Life eventually seemed normal again....